I had my latest 3 month blood draw yesterday at M.D. Anderson. I still get amazed at how much a factory the fast track lab is like. I was in and out in 10 minutes.
My CBC came back the same as my last CBC three months ago and the one before that and the one before that, except this time I did have a slight increase in RBC's and Neutrophils. Neutrophils were actually "normal", but barely so. RBC's continue to be 25% below the minimum threshold and I feel it when I go for my routine runs and sprints. Platelets don't seem to budge.
I won't know the latest PCR result until next week and I half expect that it will be the same as 3 months ago as well. I am getting these results on 20 mg Sprycel and 8 grams Curcumin. I just began to experiment with a new Curcumin, however to see if I can take fewer Curcumin tablets.
After I get my PCR test results back, I am going to try and stop Sprycel for six weeks. This will be a personal test of mine since there is no way my doctor would support my decision. I am going to just do it and then report the results. What I am going to do is wait six weeks from now while continuing to take my Sprycel dose and then six weeks prior to my next test - I'll stop taking Sprycel. Over the remaining six weeks prior to the test I will be TKI FREE. I am very curious if my PCR changes, if my CBC changes, if I feel even better than I do now.
If PCR goes up - by how much? if it doesn't go up - then I am going to stay off Sprycel for the next 3 months. And then test again. If it does go up significantly, I'll double up my dose during the next six weeks.
I don't fear CML anymore - haven't for a very long time. It is a slow disease when in the Chronic MMR phase. I expect that I will have time to re-start Sprycel if I get a one log increase in PCR and it will bring me back down to where I was before.
I'll know next week what I am going to do. It's time for the experiment.
(p.s. This new forum format does not send me email like the old one did when replies occur - I'll have to remember to check back for updates.)